Our journey in the Autism Spectrum

…where ridiculous resides and because I always seem to take the long way around a story:

My little dude is funny. Except, after BDC taking him shopping for new sneakers tonight, and finding that his feet are quickly reaching my size (he’s only 8!), he’s not truly” little”. Though I will probably refer to him as my “little dude” for the rest of his life. (So, Henry, you have been warned.) But I digress.

Later in the evening I walked upstairs to corral the little (see, I can’t help myself) chameleons to bed while BDC worked on getting pictures off of my phone and into my computer. Because sometimes I’m technically challenged. Anyway, it’s a cool evening so the windows are open and our attic fan is running. When I got to our bedroom (because the kids have claimed it as their own and are watching TV in there) I smelled something strangely odorous. Like perhaps there was a dead animal nearby in our neighborhood, or more accurately, right outside our bedroom window.

The following conversation ensued.

ME: *scrunching my nose* “What smells in here?”

Of course, I try to identify it and find the source. I go over to our window to see if it’s stronger there. You know, sort of like, “Oh this milk is sour! Taste it!” Only in this case I was inflicting this upon my own olfactory senses. Again, I digress.

As I am unable to discern where said smell is coming from, I turn back to the kids.

HENRY: “Heh, heh!” *said devilishly* “That must be me you smell.”

ME: “YOU smell?” *then I realize I can’t remember the last time Henry had a bath*

HENRY: “Yeah, come smell me.”

* again with the sour milk…? I move hesitantly toward him.*

HENRY: “Dad and I were trying some man cologne while we were at Kohl’s.”

ME: “Oh!” *laughing* “Did you really?”

HENRY: “Only two kinds. Smell.” *he pulls his t-shirt away from his neck so I can get a good sniff*

ME: “Hey, that smells pretty good!” *said with a bit of surprise* “That’s not what I was smelling a second ago.”

HENRY: “Ohhhh, yeahhhh!” *nodding his head, giving me the smooth-move-finger-gun motion and an attempt at a wink* “Dad should get two bottles of each and I should get two bottles of each for four bottles and I should wear this twice a day.”

Well, on the upside, I wouldn’t smell that dead animal smell with Henry bathing in two different types of cologne twice a day. Although, we probably would all end up not being able to smell anything after that, rendering any kind of scent a moot point. (I did mention the long way around, right? Keep reading. It’s almost the end. Really.)

By this time I’m getting the kids tucked in their beds and of course, Lucy has chimed in on the conversation.

LUCY: ” Henry, you can’t wear that!”

HENRY: “I might wear it THREE times a day! Maybe even FOUR! Ok, maybe just two. I can SO wear it, Lucy.”

LUCY: *laughing* “Ewwww! No you can’t Henry! You can’t even date yet.”

HENRY: *matter-of-factly* “Well, that is true.”

ME: “You don’t have to date to wear good smells. Remember, Henry, you used to wear Mad Hatter? And you really liked that.”

HENRY: “Well, yeah. I should probably wear man cologne more often. You know, because a man likes to smell good.”

*shaking my head. Good gods, how did I land on this planet and with these kids?!? *

So, there you have it. Because honestly I don’t know how to end this ridiculous story about an equally ridiculous conversation. But it made me so happy to see my kids laughing and being utterly serious and silly at the same time. For me, that’s reason enough to take the long way to cologne.

Today is officially our first full day of summer break. I haven’t written much over the last several months. Well, let’s be honest. I haven’t blogged at all. I’ve really missed writing here but for me to write something down it takes time, quiet, and a lot of emotional and mental energy; none of which I’ve had much of this past school year. At least regarding autism.

I’ve also had trouble coming up with something to write about. All-in-all it’s been a pretty “typical” year for the Rabinowitz tribe. Yes, autism still lives with us. Autism has challenged us. And, in the moments when I’ve watched Henry try to connect with some of his peers or not be able to do an activity because of bugs, autism has also broken my heart. But that’s normal for us; the way things just…are. I’ve written before about what I call The Rabinowitz Bubble. That’s where I’ve been living this past school year.

We’ve had great successes and we’ve had challenges. More often than not, I’ve shared small snippets of these on my Facebook page. And that’s been enough for me. In our family bubble I don’t feel the need to go into every minute detail of our lives and what living with autism is like for us. It just IS. When I think about it, that’s the big part of my not blogging these last many months. Because really, “typical” is rather “boring” isn’t it.

I’ve enjoyed being “boring”. As many, many (too many, really) of you know, autism is often a daily, 24/7/365, in-your-face, way of life. This past school year I’ve been able to scoot it aside, for the most part, and let it sit next to me. It’s refreshing. I’ve been able to concentrate more on building a business. (Yeah, that’s a shameless plug. Deal with it.) I’ve also worked on my fiction, both reading it and writing my own. I’ve been able to become more involved in Molly’s high school band. Although, that’s a bit insane of me. I’ll admit I’m not sure what I was thinking on that one! And even more crazy for me is, as of 6 weeks ago, I began running. Well, technically “wogging” (walking/jogging) but still, Runkeeper calls it running. So, “running” it is because it makes me feel better about the whole madness of it. I’ve actually been able to go a few hours without thinking about autism at all! Seriously. I can hardly believe it myself! I think I must be learning to compartmentalize it better.

All of this gives me hope that perhaps, some day, autism will take a backseat in our lives. Yeah, I’m sure at times it will be one of those annoying backseat drivers and even occasionally jump back up into the driver’s seat. That’s okay. That’s what it IS. For now, this summer, I’ll be content to let autism ride shotgun.

For whatever reason, though it’s something anxiety related I’m guessing (which deserves a much longer post), as soon as Henry puts on his jacket to wait (inside) for the morning bus he stops talking. Every morning he asks earlier and earlier if he can put on his jacket. This morning this is how this conversation played out.

HENRY: Can I put on my jacket now?

ME: *glancing at the clock* You’ve still got 15 minutes until the bus comes. If you can continue talking with us when appropriate then you can put on your jacket.

HENRY: But I can’t. It’s a ….thing.

*his new catch-all phrase for whatever he decides he is compelled to do.*

ME: No. It’s not ‘a thing’. You have words. Use them.

LUCY: But not the bad ones, Henry.

…and there you go.

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It’s been months and months since I’ve blogged. The more time that has passed I’ve felt more and more pressure to write something. Anything. But what to write about? I’ve just not been feelin’ it. As we all know, April is autism awareness/acceptance month so, as my first post since September, I thought I’d do something a little different.

In case you are new to my Facebook page and/or blog, I love chameleons. I relate to their changing colors and camouflage; their ability to always change and blend in (or not blend in). For me they also represent the diversity in everyone and their spectrum of many colors relates very well to the Autism Spectrum. It’s a whole big jumble of layers of awesome symbolism!

Anyway, getting to the point, I thought it would be fun to have my readers and fans share their own diversity; their “chameleon-ness” as it were. Below is a link for a PDF file that can be printed out and colored. I’m encouraging anyone and EVERYONE to color their chameleons in a way that best expresses themselves. This is for kids and adults! Anyone! Whether you are on the Spectrum or not!!!

I would love it, if you are so inclined, to take a picture of you and/or your little chameleon(s) and share your creations! I will be accepting pictures all this month of April. You can share them on my Facebook page, A Chameleon in the Spectrum or via my e-mail at inthespectrum@hotmail.com .

Your photos can be of just your completed chameleon coloring page or with the face of the artist as well. No names or pictures will be used unless permission is given. I thank you in advance for your participation.

This April 2014 let’s all express,celebrate and share our diversity!!!

Recourse: a source of help in a difficult situation. syn. option, possibility, alternative, resort, way out, hope, remedy.

There have been so many incredible blogs posting about the horrible tragedy of Kelli and Issy that I’m not even going to pretend that I can write anything that hasn’t already been written and certainly I could never share as eloquently as those bloggers that I have read today. But there is a lump in my throat that is just not going away tonight.

Another horrific story of an autism mom who broke. Who was so broken she felt there was no other solution. She had tried. She WAS TRYING to get her autistic daughter the help she needed and the education that she deserved. This mama was trying to keep her family safe. She was advocating for her daughter. And what completely blew me away is that she has been WRITING about her journey! She is a BLOGGER! One of “us”. A mom blogger sharing about her autistic child and their family…the good, the bad, and the ugly.

Like me. Like so many of us out there.

And she was tired. So very tired. Now she and her daughter are lying in hospital beds after a failed murder/suicide attempt. I can not comprehend this.

We read each others blogs.

We share and comment.

We, for the most part, are supportive of each other.

We reach out to each other.

We reach out to help.

We reach out to be heard.

We reach out to know we are not alone.

I cannot comprehend what Kelli was going through. I can not begin to imagine feeling so desperate, so tired, so…broken, that she felt this was her only choice. I cannot understand it nor can I condone it. But I also will not judge her. My heart is aching tonight. Not for Kelli’s actions, but for her, for Issy , for their family, and for the path that lead Kelli to make the choice that she did.

For those of you who may be reading this, please know that there is always recourse. There MUST be! We need to ensure it! We must do everything and anything to find that source of help, whether for ourselves or for someone else. Keep reaching out! This is what we must do. THIS is our recourse.

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Last weekend BDC took the kids to a birthday party at one of those arcade game places that serves pizza. No, not the one with that cheesy mouse character. No, this particular venue I like to refer to as “the mouse on steroids”. Everything is bigger, “better” and more-of. There is laser tag, bumper cars and go-karts in addition to a crap-load of video arcade games; all under one roof. There is an all-you-can-eat buffet, salad bar and dessert bar. As a potential selling point for the parents, there are several themed dining areas separate from the gaming area where the adults can hide enjoy a fairly tasty meal. I highly recommend the giant cinnamon rolls. But I digress.

So, in this super-sized world of multi-sensory stimulation, the first thing that draws my kiddos’ attention (after the go-karts & bumper cars) is the giant claw machine. In my experience as a mother of three darling children, these machines are nothing but heartache and are the money-pits of all arcade games. For $3 you get one chance to pluck out a prize with a claw that barely has any actual grasping capabilities. (I’m being generous with my use of “barely”.) At least with the other games there is a pretty good chance for them to win a few tickets that can be accumulated to trade in at the prize counter for a piece of gum. But this giant claw machine has piles of BIG toys. Real prizes. All just heaped up in a tower of treasures enclosed in a crystal clear glass box perfect for the picking. And the heavens open to shine down the brightest of lights on these gems.

Of course your kid wants the one and only,awesome, giant, super-shiny,-blingy-bling thing inside that prize bin. They want it bad. They HAVE to have it. They are CERTAIN, beyond any shadow of a doubt, that with their super-power claw skills, they can surely win that prize and it will forever be held in highest regard of all the crappy treasured arcade game prizes. After several tries accompanied by multiple outbursts, a flood of tears and their college tuition, they MIGHT finally grab a .25 cent stuffed something-or-other. (That new X-Box they wanted for their birthday but didn’t get because it was too expensive now looks like a bargain.) Hence why BDC and I usually bribe (because it’s just cheaper) encourage the kids to forego the claw. Although, I admit there have been times when our patience has been tried as thin as tissue paper and we, ourselves, are sensory overloaded, that we’ve been known to cave acquiesce. That being said, we have the condition of “three tries only”.

This recent birthday party, with BDC running solo with the two little ones, was one of those times. $3. Nothing. Another $3. Nothing. Okay. This is it. “This is your last try Henry.” $3. Henry positions the claw. Runs to one side to eye-ball the logistics. Then to the other side. “Henry you have 12 seconds to try to make a grab.” More assessment. Then he releases the claw which grabs a most coveted prize and moves toward the shoot, prize dangling precariously. And then drops. Into the shoot! Hoots of glorious joy! Henry won a giant, nubby, yellow ball, the most appropriate of prizes for my little dude on the spectrum! Which, by the way, to date, is being held in the highest regard of all arcade game prizes!

My proud boy sits upon his treasure!

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It started with a dollar store fishing pole, various plastic sea life, and a cheap blow-up wading pool. Although, we probably should have seen this one coming as Henry has always liked string, ribbon, yarn, rope, basically anything that can be whipped around and/or tied onto something and used to drag, pick up, or tie together. You get the idea.

Henry would place things around on the floor and then hold one of his tow trucks up using the string and hook to try to pick them up. When I asked him about it he said, “I’m fishin’.” He began to “fish” more often with just about anything he could get his hands on that he thought he could get to work. Toys were starting to get “broken” with pieces missing. Eventually I would find those pieces tied to yarn or string and being used at “bait” or a “hook”. Any toy with a magnetic end was even more prized!

Being that BDC and I can be a little slow on the uptake sometimes, it took a bit before we thought of the plastic fishing pole. It was a hit! “Duh!”

At one point Henry began asking for an aquarium. At first I thought how great this was that Henry could identify that perhaps this would be calming for him. And then I realized…

“Henry, you know that if we get a fish aquarium, you can’t actually ‘fish’ in it.”

“Oh.”

He stopped asking for the aquarium. The plastic pole and wading pool would have to suffice.

A couple of years ago, one of BDC’s sisters and her husband bought a home on a lovely private lake. BDC’s family loves to fish and the private dock was perfect for casual fishing. On one of our rare visits out that way, we introduced Henry and Lucy to reel fishing. (Spelling pun intended. Sorry. Couldn’t help myself). Given the low threshold for patience, Henry doesn’t always respond well to instruction. He thinks he knows and he can do it himself. Then frustration sets in and he relents to some very brief teaching. Despite having small outbursts regarding bait/flies, casting form, and not catching any fish, Henry seemed to enjoy actual fishing. (In regard to the reference to “actual fishing”, it should go without saying, “relatively speaking”.)

Back then Henry’s bug issues were not near as bad although the dragon flies and occasional wasp buzzing by was met with an outburst, he was distracted enough to keep at it. Cast, reel in. Cast, reel in… did I mention Henry’s impatience and that we were on a small lake? The bobber scarcely hit the water before he was reeling it back in.

Note to Uncle Kevin and Aunt Lisa: Your nephew may have potential as a successful trout fisherman if you ever want to take him fly fishing! Except you’ll have to clear out all of the bugs first. Good luck with that.

Since the legendary “Cicada Swarm of 2011”, Henry’s fear of bugs has gotten worse every year. He’s progressed from it being an annoyance to a dislike to an all out panicked phobia. It’s been a real problem this summer.

This past June, we once again headed out to BDC’s sister’s place. All Henry and Lucy can talk about is fishing out at Aunt Leslie’s and Uncle Jay’s house! I was completely prepared for Henry to take one step out the back door, discover a bug, and spend the remainder of our stay inside. Surprisingly he made it through the yard and down onto the dock with only a few shrieks and episodes of spastic waving of his arms to keep away any bugs; real or perceived.

This time around, both Henry and Lucy were really getting the hang of casting and they were doing a pretty impressive job at it. Henry even kept fishing after getting a hook caught in his hand! Luckily for me I was inside at the time and Grant got to deal with that. ~Thanks, babe! Anyway, Henry got right back in there and kept fishing! That’s HUGE! Henry still won’t touch the bait, whether it’s real or artificial and certainly as much as he wants to get close to a caught fish, he can’t get too close. But I can’t blame him there. It wasn’t until I was an adult, that I could bait my own hook. And sometimes I still get a bit squeamish when taking a fish off the hook. I’m just so proud of Henry that he kept at it even with all the challenges around it that he had to deal with!

I have always enjoyed fishing and I would love for the kids to stay with it. This could be one of the simple and rare activities that we could all enjoy doing together as a family! How cool would that be?!? And it will be interesting to see what Henry does when he actually catches a fish some day!